1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Anyone who has had a SPECT scan

Discussion in 'General ME/CFS Discussion' started by Aerose91, Nov 21, 2013.

  1. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    I'm wondering what your results were. Upon referencing hfme.org it says that the more areas of your brain effected the less likely you are to recover. My MRI was clear but my SPECT showed hypo perfusion in every area of the rain possibly effected. If anyone wants I have a more detailed write up, but here's my results;

    1: Decreased tracer activity in the left and right inferior orbital prefrontal cortex seen at rest.


    2: Decreased left and right temporal lobe tracer activity seen at rest.


    3: Decreased parietal lobe tracer activity seen at rest.


    4: Decreased left and right lateral prefrontal cortex tracer activity seen at rest, and decreased left and right prefrontal cortex pole tracer activity seen at rest.


    5: Mild scalloping seen at rest.


    6: Brain trauma. A combination of findings suggests past brain trauma. These findings include:

    - Decreased prefrontal pole activity

    - Decreased temporal lobe activity

    - Decreased parietal lobe activity

    - Decreased left and right occipital lobe activity

    - Decreased dorsal prefrontal cortex activity.


    Some of the brain trauma may be a result of my encephalitis which caused this, but the hypo perfusion is severe. Wondering how this compares to anyone else's?
     
    merylg, Valentijn and Allyson like this.
  2. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    HI Aero and thanks for posting

    Very interesting info ; I have had and MRI with contrast done - nature if that is the same as a SPECT scan and my results were not detailed or as clear as yours are

    I am interested to hear that now in Canada at least for example the are doing upright MRIs to trace the change in blood flow to the brain when you are tilted upright - was that included in your test?

    cheers

    Allly
     
  3. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    Hi Ally

    I had an MRI with contrast as well and it came back clear. They aren't the same scan. A SPECT measures blood flow so therefore activity in the brain vs anatomical structure like an MRI. And no, no one even suggested an upright scan to me, that would be interesting to do
     
    Valentijn and Allyson like this.
  4. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    Thanks for that clarification aero
    from memory my MRI was to detect possible CSF leaks fromteh meninges - none were found and it does not sho other things like eg aneurysms - you need a specil MRI for that.

    there is link to the news article on upright MRIs in Canada in this thread - sorry cannot be more specific - about page 5 onwards I think

    http://forum.notcrazy.net/index.php?topic=9571.0

    yes I think they are a great idea for measuring blood flow changes as we stand up.

    Ally
     
    Last edited: Nov 21, 2013
  5. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,850
    Likes:
    931
    US
    Allyson likes this.
  6. PNR2008

    PNR2008 Senior Member

    Messages:
    442
    Likes:
    690
    OH USA
    Aerose91, I wanted to get back to you earlier but had to check the archives for the info on my spect scan. This scan was ordered by Jay Goldstein MD, in 1992 and was done by Dr Ismael Mena at UCLA Imaging.

    SUMMARY- 1)Diminished perfusion in the right frontotemporal lobes. 2) Incomplete response of rCBF to exercise. 3)
    Findings suggestive of chronic myalgic encephalomyelitis.

    There's more but PM me if you need any other info.
     
    Valentijn likes this.
  7. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275

    Thanks for posting that- that's pretty much what I was wondering- what parts of your brain have hypo perfusion. My doc told me he's never seen an ME patient as bad as my scans so I was wondering how they compared. Guess he's kinda right
     
  8. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,850
    Likes:
    931
    US
    The old Newsweek article I posted about here says "CFS patients typically show abnormally low blood flow to one of the two temporal lobes. Dr. Marshall Handle-man, a neurologist at the University of Southern California Medical Center, uses an experimental device, the BEAM scan, to gauge electrical activity in different brain regions. His test reveals a similar dearth of activity in the temporal lobes and the hippocampus. This region of the brain happens to play a central role in the formation of memories."

    We have brain stem hypoperfusion according to http://www.co-cure.org/neurological.htm
    (and brain stem hypo-metabolism).
     
    merylg likes this.
  9. PNR2008

    PNR2008 Senior Member

    Messages:
    442
    Likes:
    690
    OH USA
    I had a BEAM scan too.
     
    merylg and Allyson like this.
  10. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    That's where I'm a little concerned and am thinking mine may be more the actual ME vs a CFS type syndrome. I had hypo perfusion to the entire length of both temporal lobes, parietal lobes, occipital lobes, basically both sides of the whole cerebral cortex as well as limbic system. I knew something was different because I haven't seen anyone with brain abnormalities as bad as me, so I'm not sure what this indicates and what it means for chance of recovery. I spend entire days and weeks convinced that I exist in an alternate dimension- I have almost zero touch with reality anymore. Don't know how it got this bad.
     
  11. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,850
    Likes:
    931
    US
    Well many places you see "CFS", they mean M.E. I am sure most of us have hypoperfusion, but yours sounds like more severely and more concentrated in your brain.

    You didn't see any good neurologists about your SPECT results? With that much brain involvement I am surprised you are not getting some help. (I am not surprised they ignore most of us.)
     
  12. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    No, I haven't seen a neurologist who will give me the time of day- since my MRIs were normal they told me to see a psychiatrist because "your SPECT scan will change if you have a bad hair day". I don't have it in me to argue

    And yes, this disease is probably 90% concentrate in my brain for me. Yes I have pain, headaches, light sensitivity, POTS, PEM etc but NONE of them even come CLOSE to the severity of the symptoms in my brain. And the worst part? My brain never fluctuates, not even a little bit, never gets better- only stable or worse daily.

    I'm thinking if trying to get a Skype appt with Dr Hyde to have him examine my test results and SPECT to see if he has anything for me
     
  13. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    Hey, what is a Beam scan please and what did it show?

    thanks

    Ally
     
  14. Healthyartist

    Healthyartist

    Messages:
    11
    Likes:
    3
    I'm considering having a SPECT scan done and am concerned about what they inject for the IV in order to scan you. Did any of you have issues tolerating the Technetium -99?
     
  15. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    @Healthyartist

    I thought the same since I am extremely sensitive to things however I had no reactions. I even had a bad reaction to contrast dye on my MRI but not to the SPECT
     
  16. Healthyartist

    Healthyartist

    Messages:
    11
    Likes:
    3
    That's great to know @Aerose91! Thank you! That is definitely my biggest concern about it. What was your reaction to the MRI contrast dye? I went to the hospital all ready to have the test and refused as soon as I discovered they were planning to inject me with contrast. I'm VERY weary of injecting myself with anything besides b12! :D
     
  17. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    I got kind of revved up for a while and agitated. Lights were extra bright for a bit as well. This only lasted for a couple hours though then settled down. It wasn't too bad.

    For what it's worth when I had the SPECT done the girl who injected it told me that it's about the same amount of radiation as being on a plane
     
    SickOfSickness likes this.
  18. Healthyartist

    Healthyartist

    Messages:
    11
    Likes:
    3
    Hmmmm. I imagine myself on airplanes once fully healed, but NOW? I think it would downright kill me. But, I see your point. How ill are you @Aerose91 and what other things are you sensitive to? Just trying to gage the risk potential.

    Have you figured out anything to help yourself from these results?
     
  19. Aerose91

    Aerose91 Senior Member

    Messages:
    617
    Likes:
    275
    Hi @Healthyartist

    I wouldn't be able to fly on a plane at this point either but the SPECT didn't bother me at all. I'm generally sensitive to smells and chemicals and VERY sensitive to medications.

    The SPECT doesn't lead you to any treatments but is more of a diagnostic tool. For me it confirmed that I had a severe illness and validated a mitochondrial disease. I am very ill but 90% of my symptoms are mental- in fact I was so bad that no M.E. doctor had any idea what to do with me because they hadn't heard someone having such intense brain symptoms before. My SPECT showed massive hypoperfusion thus validating my concerns.

    It was worth it enough to shut up the people that told me this is all in my head
     
  20. Healthyartist

    Healthyartist

    Messages:
    11
    Likes:
    3
    I'm so sorry @Aerose91. So, do you have any clue what might have happened to you? Infection? Carbon monoxide poisoning? Have you tried gingko?
     

See more popular forum discussions.

Share This Page